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Is It Possible to Use Interpretative Phenomenological Analysis in Research with People Who Have Intellectual Disabilities?

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Title: Is It Possible to Use Interpretative Phenomenological Analysis in Research with People Who Have Intellectual Disabilities?
Language: English
Authors: Rose, John (ORCID 0000-0003-2672-9767), Malik, Kulsoom, Hirata, Edward, Roughan, Harry, Aston, Kirsty, Larkin, Michael
Source: Journal of Applied Research in Intellectual Disabilities. Sep 2019 32(5):1007-1017.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 11
Publication Date: 2019
Document Type: Journal Articles
Reports - Research
Descriptors: Phenomenology, Intellectual Disability, Guidelines, Research Methodology, Researchers, Competence
DOI: 10.1111/jar.12605
ISSN: 1360-2322
Abstract: Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: We conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of "good" IPA work. Results: Twenty-eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as "good" quality; 16 (57%) were "acceptable", and 6 (21%) were "poor." This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. We encourage researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.
Abstractor: As Provided
Entry Date: 2019
Accession Number: EJ1223809
Database: ERIC
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  Value: <anid>AN0137846752;e0301sep.19;2019Aug03.05:50;v2.2.500</anid> <title id="AN0137846752-1">Is it possible to use interpretative phenomenological analysis in research with people who have intellectual disabilities? </title> <p>Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: We conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of "good" IPA work. Results: Twenty‐eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as "good" quality; 16 (57%) were "acceptable", and 6 (21%) were "poor." This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. We encourage researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.</p> <p>Keywords: intellectual disabilities; interpretative phenomenological analysis; learning disabilities; qualitative research; quality</p> <hd id="AN0137846752-2">INTRODUCTION</hd> <p>A study by Beail and Williams ([<reflink idref="bib5" id="ref1">5</reflink>]) reported a significant increase in the number of research articles using qualitative methods which were published in three major intellectual disability journals, over the first decade of the 2000s. They noted a marked increase in studies that involved people with intellectual disabilities as participants. A more recent special edition of a journal focussing on qualitative research (Rose & Stenfert Kroese, [<reflink idref="bib44" id="ref2">44</reflink>]) has highlighted the growing interest in qualitative research with this group. This includes the involvement of people with intellectual disabilities not only as qualitative research participants (e.g., Larkin, Unwin, et al., [<reflink idref="bib23" id="ref3">23</reflink>]; Williams, Thrift, & Rose, [<reflink idref="bib59" id="ref4">59</reflink>]), but also as members of the research team (Theodore et al., [<reflink idref="bib55" id="ref5">55</reflink>]; Unwin et al., [<reflink idref="bib57" id="ref6">57</reflink>]).</p> <p>Previously, researchers have been cautious about qualitative methods in this field. In part, this may have arisen from a view that people with intellectual disabilities present challenges to qualitative researchers: "inarticulateness, unresponsiveness, a concrete frame of reference and problems with time" (Booth & Booth, [<reflink idref="bib7" id="ref7">7</reflink>]). Researchers may also have been concerned about whether participants with intellectual disabilities are able to give informed consent (Iacono, [<reflink idref="bib18" id="ref8">18</reflink>]) to a form of research which may have more complex ethical implications (e.g., direct, but anonymized quotations will appear in the final report). Much research which ostensibly explores the experiences of people with intellectual disabilities has relied on proxy perspectives (e.g., from carers or staff; Dillenburger & McKerr [<reflink idref="bib11" id="ref9">11</reflink>]; Hatton & Emerson, [<reflink idref="bib17" id="ref10">17</reflink>]). Gradually, however, there has been a constructive turn towards adaption, so that methods of recruitment, consent‐taking, data collection and so on, are better able to involve people with intellectual disabilities in meaningful qualitative research. Early work in this area by Atkinson ([<reflink idref="bib2" id="ref11">2</reflink>]) advocated the importance of helping people with intellectual disabilities to think about their own circumstances and acknowledging that they are experts in their own experiences.</p> <p>Given that the term "intellectual disabilities" can include people with varying intellectual and functional abilities (Scanlon, [<reflink idref="bib46" id="ref12">46</reflink>]), it is important that research in this field is based on clearly situated sampling. Studies which include a heterogeneous range of intellectual ability are possible, but they are very challenging. This is partly due to the need to provide different solutions to all of the "involvement features" described above, and partly because of the difficulty of showing how themes map onto the different contexts and experiences associated with different profiles of intellectual ability. Well‐defined and reasonably homogenous samples may be more appropriate for many research questions, allowing the researcher to focus on a particular context. This can make it easier for readers to understand the implications and context of the analysis. One qualitative methodology which aims to do this is interpretative phenomenological analysis (IPA; Smith, Flowers, & Larkin, [<reflink idref="bib52" id="ref13">52</reflink>]). This review aims to evaluate the use of IPA in research with people with intellectual disabilities.</p> <hd id="AN0137846752-3">Interpretative phenomenological analysis</hd> <p>Interpretative phenomenological analysis is an approach to qualitative inquiry which is widely used in applied psychology (Harper, [<reflink idref="bib16" id="ref14">16</reflink>]). IPA draws upon the hermeneutic and phenomenological traditions to focus on how <emph>the researcher</emph> makes sense of how <emph>participants</emph> make sense of a salient experience (Smith et al., [<reflink idref="bib52" id="ref15">52</reflink>]). It combines these interests via an idiographic commitment to understanding <emph>particular</emph> experiences, <emph>in context</emph> (Larkin, Watts, & Clifton, [<reflink idref="bib24" id="ref16">24</reflink>]). Successful IPA (Smith, [<reflink idref="bib51" id="ref17">51</reflink>]) balances these three components, grounding an analysis in enough case‐level detail for the reader to be able to understand the context of the participants' concerns, whilst drawing out the core claims which participants make about their experiences, and also offering a more interpretative perspective, to transcend the explicit claims of individual voices within the data and provide a psychological insight into the phenomenon.</p> <p>To meet these commitments, IPA researchers tend to prefer in‐depth verbatim data (rich in descriptive or reflective content, or both) from relatively small samples of participants, organized around a shared perspective on the topic of interest, to achieve a degree of homogeneity. More recent developments within IPA include emphases on the contribution which can be made by case studies (Smith, [<reflink idref="bib50" id="ref18">50</reflink>]) the gains which can be made by combining several homogenous samples within in a more complex "multiple perspective design" (Larkin et al., [<reflink idref="bib21" id="ref19">21</reflink>]), and the use of visual data alongside verbatim content (Boden & Eatough, [<reflink idref="bib6" id="ref20">6</reflink>]).</p> <p>Interpretative phenomenological analysis has the potential to make an important contribution to the field of intellectual disability research. As an approach, it provides an opportunity to hear the concerns of research participants and to understand these concerns in the context of a more interpretative "birds' eye" view from the researcher. This is a domain where there is much to learn about the development, needs and preferences of people with intellectual disabilities, in different contexts. This may be particularly important for evaluating the acceptability of services and interventions, or developing more nuanced approaches to supporting the interpersonal lives of people with intellectual disabilities. Good IPA work can contribute to this learning.</p> <hd id="AN0137846752-4">Evaluating the quality of IPA research</hd> <p>There is no consensus—and there are many concerns—about the use of quality criteria for the evaluation of qualitative research studies (Smith & McGannon, [<reflink idref="bib48" id="ref21">48</reflink>]). Whilst many guidelines and frameworks do exist which claim to be applicable across a range of methods (e.g., Elliott, Fischer, & Rennie, [<reflink idref="bib14" id="ref22">14</reflink>]; Morrow, [<reflink idref="bib35" id="ref23">35</reflink>]; Tong et al., [<reflink idref="bib56" id="ref24">56</reflink>]; Yardley, [<reflink idref="bib61" id="ref25">61</reflink>]), all of these are embedded with epistemological and methodological assumptions which are appropriate for some methods, but not others. Rather than import a framework which does not meet our needs, in this paper we evaluate IPA's use in the field of intellectual disability research, with a bespoke framework.</p> <p>In a previous systematic review of IPA's contribution to health psychology research, Smith ([<reflink idref="bib51" id="ref26">51</reflink>]) defined the functional features of a high‐quality IPA paper: a clear focus; strong data; rigour; sufficient space to elaborate themes; interpretative analysis which is beyond descriptive; discussion of both convergence and divergence of data; and well‐written. These are pragmatic criteria designed to detect whether a paper is "good enough" in IPA terms, rather than checklist for researchers to follow. Smith rated 27% of the papers as good, 55% as acceptable and 18% as unacceptable. He concluded that the results were "respectable" given that IPA is a relatively new methodology.</p> <p>In a Methods chapter on IPA, Larkin and Thompson ([<reflink idref="bib22" id="ref27">22</reflink>]) offer a slightly more elaborate framework for evaluating IPA, which combines similarly pragmatic features for recognizing "good enough" work, with some aspirational elements. They proposed that a "good" piece of IPA research will have the following features: appropriate data from appropriate informants; idiographic focus; transparent data collection; a focus on how things are understood; a balance between phenomenological detail and interpretative detail; appropriate use of triangulation, audit or credibility checks; extracts to support commentary; contextual detail with regard to extracts, research and participants; attention to process; and engagement with theory when presenting the analysis.</p> <p>In this review, we draw on both of these frameworks to develop a bespoke set of evaluative criteria.</p> <hd id="AN0137846752-5">AIMS</hd> <p>This review has the following aims:</p> <p></p> <ulist> <item> Evaluate the quality of IPA research conducted with people who have intellectual disabilities.</item> <p></p> <item> Identify any challenges to the development of good quality IPA research conducted with people who have intellectual disabilities.</item> </ulist> <hd id="AN0137846752-6">METHODOLOGY</hd> <p></p> <hd id="AN0137846752-7">Search strategy</hd> <p>Three electronic databases (MEDLINE, PsycINFO and CINAHL) were searched. A combination of "subject heading" searching and free text searching was used across the three databases. The main search terms for free text searching focussed on intellectual disability (Learning diff*, Mental retardation, Learning disab*, Mental deficien*, Intellectual Disab*) and IPA (Interpretative phenomenological analysis, Interpretive phenomenological analysis). All the terms were exploded to ensure that more specific versions of the umbrella terms were also included in the search. Free text searching also known as keyword searching was also used. The different variations of the terms including truncations were combined using the Boolean operator OR. They were then entered in parenthesis to the subject heading searching and combined using AND.</p> <p>The databases were searched with no date restriction, and this was conducted on 1 November 2017, generating a total of 363 papers. The inclusion and exclusion criteria (Figure) were then applied to generate the final papers included in this review.</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01sep19/jar12605-fig-0001.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar12605-fig-0001.jpg" title="Criteria for inclusion and exclusion" /> </p> <p></p> <p>In total, 29 studies met the inclusion criteria for this review. Two of the papers were different analyses which appeared to be drawn from the same sample, in the same research study by the same author (Pestana, [<reflink idref="bib38" id="ref28">38</reflink>], [<reflink idref="bib39" id="ref29">39</reflink>]). To avoid duplication, we included the earlier of these two papers in the review. This review therefore covers a total of 28 papers.</p> <hd id="AN0137846752-9">Quality evaluation</hd> <p>The following steps describe the process of developing, populating and implementing a quality guide specifically designed to evaluate IPA for research with people with intellectual disabilities.</p> <hd id="AN0137846752-10">Developing the quality guide</hd> <p>The specific focus of Smith's ([<reflink idref="bib51" id="ref30">51</reflink>]) evaluation was on the features which distinguish acceptable, unacceptable and good papers from each other (Figure). The framework in Larkin and Thompson ([<reflink idref="bib22" id="ref31">22</reflink>]) only makes recommendations for good papers. These are combined in Figure. A more general quality checklist for qualitative research by Yardley ([<reflink idref="bib61" id="ref32">61</reflink>]) is also often discussed in the context of IPA research (e.g., Smith et al., [<reflink idref="bib52" id="ref33">52</reflink>]). Yardley argues that there are four main areas to consider when evaluating qualitative research: sensitivity to context; commitment and rigour; transparency and coherence; and impact and importance.</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01sep19/jar12605-fig-0002.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar12605-fig-0002.jpg" title="Key features of good, acceptable and poor IPA papers" /> </p> <p></p> <hd id="AN0137846752-12">Populating the guide</hd> <p>Taking into consideration quality issues raised by Smith ([<reflink idref="bib51" id="ref34">51</reflink>]), Larkin and Thompson ([<reflink idref="bib22" id="ref35">22</reflink>]) and Yardley (2009), our quality guide was populated by six main areas:</p> <p></p> <ulist> <item> <bold> Theory </bold> relates specifically to Smith's ([<reflink idref="bib51" id="ref36">51</reflink>]) focus on whether a research paper adheres to the theoretical principles of IPA.</item> <p></p> <item> <bold> Informants </bold> relates to "sensitivity to context" in Yardley (2009), such as "does the research take into consideration whether the research methodology is appropriate to the participants?" As the specific focus of this paper is on using IPA with people with intellectual disabilities, we also added a column to record information about the level of disability reported for samples in each study.</item> <p></p> <item> <bold> Transparency </bold> relates directly to Yardley (2009) with regard to "transparency and coherence." Transparency is especially important for those evaluating research to consider whether it is clear how the research was conducted and evaluated. It is worth noting that this guide has separated Yardley's criteria of "transparency and coherence" into two categories. It was decided that there are specific issues relating to IPA (such as number of themes) which could not be captured under transparency.</item> <p></p> <item> <bold> Coherence of analysis </bold> takes into consideration specific IPA issues raised by Smith ([<reflink idref="bib51" id="ref37">51</reflink>]) such as the evidence base for the themes.</item> <p></p> <item> <bold> Focus </bold> maps onto Yardley's criteria of "impact and importance" and also Smith's ([<reflink idref="bib51" id="ref38">51</reflink>]) and Larkin and Thompson's ([<reflink idref="bib22" id="ref39">22</reflink>]) recommendations that good papers are clearly focussed, and engaged with theory.</item> <p></p> <item> <bold> Trustworthiness </bold> was also added as quality marker as Larkin and Thompson ([<reflink idref="bib22" id="ref40">22</reflink>]) suggest that it is important that IPA researchers demonstrate that they have taken credibility issues into consideration (such as the appropriate use of triangulation).</item> </ulist> <p>The six main areas were used as headings for the structured tool designed for this study. A shortened version of the tool is shown in Figure. Details to consider when evaluating the research were posed as both concrete questions (e.g., how many participants?) and more open‐ended questions (how were the participants engaged in the research?).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01sep19/jar12605-fig-0003.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar12605-fig-0003.jpg" title="Structured tool including quality criteria developed for this paper" /> </p> <p></p> <p>To aid more novice researchers, it was decided that it would be helpful for each heading to have some indicators as to what would constitute good, acceptable or poor application of each of the quality domains. For example, with regard to theory, a "good" application of theory would be demonstrated through all theoretical principles of IPA being implemented appropriately, "acceptable" application would mean the researchers made a good attempt and "poor" application of theory would mean that the research is not consistent with the theoretical principles of IPA.</p> <hd id="AN0137846752-14">Giving each paper an overall rating</hd> <p>An overall rating of good, acceptable or poor quality based on Figure was ascribed to each paper via the following process:</p> <p></p> <ulist> <item> The quality guide was systematically completed for each paper, with a researcher assigning a rating for each domain.</item> <p></p> <item> Each completed quality guide was assessed individually using the characteristics of the three quality categories outlined in Figure. For example, if a paper was rated as "poor" for theory, then it is likely that the whole paper would be rated poor because it "was not consistent with the theoretical principles of IPA." Each quality domain (theory, informants etc.) was considered when assigning an overall rating. This step in the rating process was deliberately not designed as a prescriptive process as rating papers is complex and requires readers to consider all aspects of the research holistically. For this reason, a point‐based system was deliberately not used.</item> <p></p> <item> Each paper was reviewed in turn and assigned an overall rating, using the new synthesized criteria designed for this study. A selection of the papers was also blind‐rated by another rater to obtain a measure of reliability.</item> </ulist> <p>The papers were then assigned a poor, acceptable or good label based on the application of Figure. It is important to note that "poor" in this context indicates a poor example of IPA according to IPA's stated principles, rather than a paper which has no merit, or which may not meet more general standards for qualitative research.</p> <hd id="AN0137846752-15">Reliability of the measure</hd> <p>Seven papers were rated by two independent raters on the measure. The percentage agreement for the assessment of the papers was 86% agreement. For the categories within the seven papers, agreement was 79%. For each of the components, agreement was as follows: Theory 100%; Informants 79%; Transparency 75%; Coherence of analysis 64%; Focus 86%; and Trustworthiness 86%. Cohen's kappa for all of the components of the seven papers was significant (kappa = 0.565, <emph>p</emph> < 0.001).</p> <p>As a further check on reliability, a master's student examined the same seven papers using the measure. Her overall assessment of the papers agreed completely with one of the previous raters and disagreed with the other rater on one paper in relation to their overall quality suggesting that reliability between raters was robust.</p> <hd id="AN0137846752-16">Quality characteristics of the 28 papers reviewed</hd> <p>Six papers were rated as poor (Baum & Burns, [<reflink idref="bib3" id="ref41">3</reflink>]; Judge, Walley, Anderson, & Young, [<reflink idref="bib19" id="ref42">19</reflink>]; Lewis, Lewis, & Davies, [<reflink idref="bib26" id="ref43">26</reflink>]; MacDonald, Sinason, & Hollins, [<reflink idref="bib27" id="ref44">27</reflink>]; Merriman & Beail, [<reflink idref="bib31" id="ref45">31</reflink>]; Pestana, [<reflink idref="bib38" id="ref46">38</reflink>]). None of the "poor" papers implemented IPA concepts adequately, meaning that they did not adhere consistently to core commitments of phenomenology, hermeneutics and idiography. Secondly, all of the poor papers lacked some transparency with regard to the stages of the research. Thirdly, none of these papers explained the interview schedule and its development. Fourthly, these papers lacked sufficient data extracts to support the themes presented. Finally, none of them reported on any methods employed to demonstrate trustworthiness.</p> <p>Sixteen papers were rated as "acceptable" (Anslow, [<reflink idref="bib1" id="ref47">1</reflink>]; Brown & Beail, [<reflink idref="bib4" id="ref48">4</reflink>]; Dysch, Chung, & Fox, [<reflink idref="bib13" id="ref49">13</reflink>]; Gould & Dodd, [<reflink idref="bib15" id="ref50">15</reflink>]; Kenyon, Beail, & Jackson, [<reflink idref="bib20" id="ref51">20</reflink>]; MacMahon et al., [<reflink idref="bib28" id="ref52">28</reflink>]; Malik, Unwin, Larkin, Kroese, & Rose, [<reflink idref="bib29" id="ref53">29</reflink>]; McRitchie, McKenzie, Quayle, Harlin, & Neumann, [<reflink idref="bib30" id="ref54">30</reflink>]; Mitchell, Clegg, & Furniss, [<reflink idref="bib32" id="ref55">32</reflink>]; Monteleone & Forrester‐Jones, [<reflink idref="bib34" id="ref56">34</reflink>]; Newberry, Martin, & Robbins, [<reflink idref="bib36" id="ref57">36</reflink>]; Robinson, Escopri, Stenfert Kroese, & Rose, [<reflink idref="bib41" id="ref58">41</reflink>]; Rushbrooke, Murray, & Townsend, [<reflink idref="bib45" id="ref59">45</reflink>]; Shewan, McKenzie, Quayle, & Crawley, [<reflink idref="bib47" id="ref60">47</reflink>]; Sullivan et al., [<reflink idref="bib54" id="ref61">54</reflink>]; Wilson et al., [<reflink idref="bib60" id="ref62">60</reflink>]). All of these papers subscribed to the theoretical principles of IPA. It was clear that IPA was an appropriate methodology for their aims. These papers varied in terms of whether they adhered to the other quality markers.</p> <p>The remaining six papers were rated as "good" (Clarkson, Murphy, Coldwell, & Dawson, [<reflink idref="bib9" id="ref63">9</reflink>]; Cookson & Dickson, [<reflink idref="bib10" id="ref64">10</reflink>]; Dinwoodie, Greenhill, & Cookson, [<reflink idref="bib12" id="ref65">12</reflink>]; Roscoe, Petalas, Hastings, & Thomas, [<reflink idref="bib42" id="ref66">42</reflink>]; Rose et al., [<reflink idref="bib43" id="ref67">43</reflink>]; Stenfert Kroese et al., [<reflink idref="bib53" id="ref68">53</reflink>]). These papers met the majority of quality criteria but there were some exceptions, which included specifying the level of intellectual disability of the participants, and a lack of homogeneity in some samples.</p> <hd id="AN0137846752-17">RESULTS</hd> <p>Four of the papers investigated the experiences of parents with intellectual disabilities (Baum & Burns, [<reflink idref="bib3" id="ref69">3</reflink>]; Gould & Dodd, [<reflink idref="bib15" id="ref70">15</reflink>]; Shewan et al., [<reflink idref="bib47" id="ref71">47</reflink>]; Wilson et al., [<reflink idref="bib60" id="ref72">60</reflink>]). Seven of the studies explored the experience of receiving psychological therapy (Anslow, [<reflink idref="bib1" id="ref73">1</reflink>]; Lewis et al., [<reflink idref="bib26" id="ref74">26</reflink>]; MacDonald et al., [<reflink idref="bib27" id="ref75">27</reflink>]; MacMahon et al., [<reflink idref="bib28" id="ref76">28</reflink>]; Merriman & Beail, [<reflink idref="bib31" id="ref77">31</reflink>]; Roscoe et al., [<reflink idref="bib42" id="ref78">42</reflink>]; Stenfert Kroese et al., [<reflink idref="bib53" id="ref79">53</reflink>]). Three studies looked at the experiences of people with intellectual disabilities as inpatients in hospital (Brown & Beail, [<reflink idref="bib4" id="ref80">4</reflink>]; Clarkson et al., [<reflink idref="bib9" id="ref81">9</reflink>]; Cookson & Dickson, [<reflink idref="bib10" id="ref82">10</reflink>]). Three further papers looked at the experience of diagnosis and disability (Dysch et al., [<reflink idref="bib13" id="ref83">13</reflink>]; Kenyon et al., [<reflink idref="bib20" id="ref84">20</reflink>]; Monteleone & Forrester Jones, [<reflink idref="bib33" id="ref85">33</reflink>]) and two at relationships (Rushbrooke et al., [<reflink idref="bib45" id="ref86">45</reflink>]; Sullivan et al., [<reflink idref="bib54" id="ref87">54</reflink>]). Other papers explored the experience of bereavement (McRitchie et al., [<reflink idref="bib30" id="ref88">30</reflink>]); ageing (Newberry et al., [<reflink idref="bib36" id="ref89">36</reflink>]); retirement from day centres (Judge et al., [<reflink idref="bib19" id="ref90">19</reflink>]); trauma (Mitchell et al., [<reflink idref="bib32" id="ref91">32</reflink>]); fire setting (Rose, Lees‐Warley, & Thrift, [<reflink idref="bib43" id="ref92">43</reflink>]); mental health (Robinson et al., [<reflink idref="bib41" id="ref93">41</reflink>]); ethnic minorities (Malik et al., [<reflink idref="bib29" id="ref94">29</reflink>]); self‐concept (Pestana, [<reflink idref="bib38" id="ref95">38</reflink>]); and identity (Dinwoodie et al., [<reflink idref="bib12" id="ref96">12</reflink>]).</p> <p>Smith ([<reflink idref="bib51" id="ref97">51</reflink>]) argues that IPA research should have a clear focus: the topic should be specific and not broad. A specific focus, and a commitment to capturing context and detail (idiography), requires a homogenous sample. All papers rated as either good or acceptable papers also had a clear research focus, with the exception of Kenyon et al., ([<reflink idref="bib20" id="ref98">20</reflink>]). This paper explored the experience of people being diagnosed with an intellectual disability. The majority of the participants in the sample had been "diagnosed" to have an intellectual disability whilst they were still in school. The mean age of the participants was 47. This raises the question of the current importance of the diagnosis itself, for many participants, as well as their ability to remember an experience that may have occurred over 30 years previously. More explicit reframing of the focus in terms of the continued significance of the diagnosis might have been more meaningful: in the analysis section, the authors reflect on the process of "coming to terms with diagnosis," for example, which might have been a better statement of the study's focus. When the research topic is not of immediate importance to the participants, it is likely to impact on their ability to engage with the research process and impact on the quality of the data.</p> <p>Smith et al., ([<reflink idref="bib52" id="ref99">52</reflink>]) suggest that a sample size of 6–10 participants is ideal for those with more experience using qualitative methods. They add that larger sample sizes may be appropriate when the quality or depth of data is more variable. The sample sizes for the papers in this review appeared in line with this recommendation, with the exception of four papers. Judge et al., ([<reflink idref="bib19" id="ref100">19</reflink>]), Monteleone and Forester Jones ([<reflink idref="bib33" id="ref101">33</reflink>]) and McRitchie et al (2012) recruited 16, 15 and 13 participants, respectively. The main challenges of managing larger sample sizes in IPA are as follows: <emph>a.</emph> meeting idiographic commitments and <emph>b.</emph> maintaining depth of analysis.</p> <p>In 13 of the papers, the homogeneity of the sample was either poorly rationalized, poorly achieved or both (Dysch et al., [<reflink idref="bib13" id="ref102">13</reflink>]; Judge et al., [<reflink idref="bib19" id="ref103">19</reflink>]; Kenyon et al., [<reflink idref="bib20" id="ref104">20</reflink>]; MacDonald et al., [<reflink idref="bib27" id="ref105">27</reflink>]; Malik et al., [<reflink idref="bib29" id="ref106">29</reflink>]; Monteleone & Forrester‐Jones [<reflink idref="bib34" id="ref107">34</reflink>]); Robinson et al., [<reflink idref="bib41" id="ref108">41</reflink>]; Roscoe et al., [<reflink idref="bib42" id="ref109">42</reflink>]; Rushbrooke et al., [<reflink idref="bib45" id="ref110">45</reflink>]; Sullivan et al., [<reflink idref="bib54" id="ref111">54</reflink>]; Wilson et al., [<reflink idref="bib60" id="ref112">60</reflink>]). Sampling strategies which do not articulate the shared perspective upon the phenomenon of interest not only violate the idiographic philosophy of IPA, but also impact on the researcher's ability to formulate theories (Smith, [<reflink idref="bib49" id="ref113">49</reflink>]). Many of the researchers overlooked the importance of homogeneity with regard to the participants' level of intellectual disability. Studies sometimes assumed the participants to have an intellectual disability due to their eligibility to receive input from community intellectual disability services.</p> <p>All of the studies engaged their participants through individual face‐to‐face semi‐structured interviews. Malik et al., ([<reflink idref="bib29" id="ref114">29</reflink>]) used both individual interviews and a small focus group. Only nine of the papers gave a good account of how the interview schedule was developed. Most of the papers made references to the interview topics only (e.g., Rose et al., [<reflink idref="bib43" id="ref115">43</reflink>]; Sullivan et al., [<reflink idref="bib54" id="ref116">54</reflink>]). However, Mitchell et al., ([<reflink idref="bib32" id="ref117">32</reflink>]) attached the interview schedule as an appendix. The advantage of attaching an interview schedule is that it improves the transparency of the research and helps the reader to explore whether the interview has been adapted in any way to accommodate the needs of people with intellectual disabilities.</p> <p>In IPA, the rigour of the analysis process is reflected in authors attending to both the breadth and the depth of the themes derived (Smith, [<reflink idref="bib51" id="ref118">51</reflink>]). The research process underpinning this must be transparent. Most papers included details about the procedure of the analysis, including information about the <emph>process</emph> of coding (though rarely about the <emph>focus</emph> of coding, which is more useful to a reader). The number of themes varied between the papers, from one super‐ordinate theme with three sub‐themes (Shewan et al., [<reflink idref="bib47" id="ref119">47</reflink>]) to six super‐ordinate themes and 17 sub‐themes (Lewis et al., [<reflink idref="bib26" id="ref120">26</reflink>]). Generally, smaller numbers of themes allow for greater in‐depth elaboration, if those themes have a sharp focus.</p> <p>The elaboration of themes is vital in qualitative research. Smith ([<reflink idref="bib51" id="ref121">51</reflink>]) suggests that in some cases, researchers are better off using a paper to develop a subsection of their themes in an elaborate fashion rather than presenting them all superficially. Smith ([<reflink idref="bib51" id="ref122">51</reflink>]) recommends that, as a rule of thumb, we might expect to see evidence from at least half of the sample underpinning the reporting of any major theme. Given that a theme might not speak to the whole of a sample, we have interpreted this as "half of the participants <emph>contributing to</emph> a theme should also contribute to the reporting of that theme." The poor papers in our review often fail to develop themes via discussion of sufficient data extracts.</p> <p>The quotes in all of the papers appeared distinctly different to IPA papers that included non‐disabled participants. The extracts were often brief and decontextualized, such as "makes me hot" (Dysch et al., [<reflink idref="bib13" id="ref123">13</reflink>]). Some of the papers had longer excerpts, such as "All the babies were crying and I could not get to sleep. Kept moving me from one room to another I didn't know where to put my face, when I saw them babies" (Mitchell et al., [<reflink idref="bib32" id="ref124">32</reflink>]). Interviews with people with intellectual disability often involve more scaffolding from the researcher, and a more conversational, dyadic style. In the papers in our review, however, the contributions of the researcher were often invisible. Quotes in the papers rarely exceeded two or three sentences.</p> <p>IPA requires researchers to be interpretative and extends the account beyond the explicit claims of the participants. All of the good papers had sufficient numbers of extracts to support some interpretation. Each had also attempted to provide both descriptive and interpretative analyses. For this reason, data extracts were not taken purely at face value and were not left to "speak for themselves."</p> <p>When an IPA paper investigates the experiences of more than one participant, it is important for researchers to demonstrate the concerns of individual participants in the context of themes which explore shared experiences (Smith, [<reflink idref="bib51" id="ref125">51</reflink>]). This is a difficult skill to master. Smith ([<reflink idref="bib51" id="ref126">51</reflink>]) believes that this is the "hallmark" of good IPA work. The distinct features of the "good" papers in comparison with the "acceptable" papers were that they were able to demonstrate convergence and divergence effectively. Out of six good papers, five were able to demonstrate this. For example, Clarkson et al., ([<reflink idref="bib9" id="ref127">9</reflink>]) states "Six participants made reference to..." This is a simple strategy for contextualizing the representativeness of a theme. The paper also explores individual experiences. A simple indicator of this is often the use of pseudonyms (rather than participant numbers), allowing the reader to keep track of who is who. A stronger indicator is time taken to step aside from the main narrative and explore cases where a single participant might strongly exemplify—or contradict—a thematic point. Some of the better papers also provided evidence of triangulation, audit and credibility checks (e.g., Stenfert Kroese et al., [<reflink idref="bib53" id="ref128">53</reflink>]).</p> <hd id="AN0137846752-18">Specific Issues relating to using IPA with people with intellectual disabilities</hd> <p>It is a common approach for people with intellectual disabilities to have proxies present during research interviews to support them with communicating with researchers (Whitehurst, [<reflink idref="bib58" id="ref129">58</reflink>]). Some of the papers explicitly stated that carers were present in some of the interviews to support the person with an intellectual disability (Anslow, [<reflink idref="bib1" id="ref130">1</reflink>]; Roscoe et al., [<reflink idref="bib42" id="ref131">42</reflink>]; Rushbrooke et al., [<reflink idref="bib45" id="ref132">45</reflink>]). Anslow ([<reflink idref="bib1" id="ref133">1</reflink>]) acknowledged that methodologically this was supportive in allowing people to take part in the research who might have otherwise struggled to do so. There are IPA method papers (such as Palmer, Larkin, Visser, & Fadden, [<reflink idref="bib37" id="ref134">37</reflink>]) which discuss strategies for analysing data where there are multiple speakers, but the papers in our review did not report that they drew upon these strategies.</p> <p>Cookson and Dickson ([<reflink idref="bib10" id="ref135">10</reflink>]) reported that the participants in their study presented with limited vocabulary. Regardless of this, Cookson and Dickson ([<reflink idref="bib10" id="ref136">10</reflink>]) were able to apply an IPA approach very effectively. This suggests that if IPA is applied appropriately, verbal articulacy should not be a stumbling block. Similarly, Brown and Beail ([<reflink idref="bib4" id="ref137">4</reflink>]) noted that one of the limitations of their paper is that there were concerns that the participants might struggle with interviews due to their limited verbal abilities, and thus, that the data would not be "rich." Despite these concerns, the authors went onto conclude that the participants were open, and shared valuable insights into their experiences. Often concerns about "richness" can focus on the limitations of vocabulary, expressive language or reflective capacity. Rich data take many forms, however, and in phenomenological research, detailed descriptions (or processes or events, for examples) can be an important form of "richness." Eliciting rich descriptions from participants takes patience, imagination and planning from the researcher (e.g., see Petitmengin, [<reflink idref="bib40" id="ref138">40</reflink>]), but it does not necessarily require an extensive vocabulary or extraordinary level of reflective insight from the participant.</p> <p>Some papers, especially more recent studies, have used different communication devices to aid conversations between participants and interviewers. For example, MacMahon et al., ([<reflink idref="bib28" id="ref139">28</reflink>]) used visual prompts of people and places, along with activities, that related to the intervention they were evaluating. Anslow ([<reflink idref="bib1" id="ref140">1</reflink>]) also specified that some participants used additional communication methods such as Makaton. Whilst this is specified, the way in which Makaton has been incorporated into the analysis has not been recorded.</p> <hd id="AN0137846752-19">DISCUSSION</hd> <p>This paper describes a methodology for appraising IPA research for people with intellectual disabilities, which appears to be reliable, and which suggests that it is possible to conduct good quality IPA research with this population. This review rated 6/28 (22%) papers to be of good quality, 16/28 (57%) as acceptable quality and 6/28 (21%) to be of poor quality. In comparison, Smith ([<reflink idref="bib51" id="ref141">51</reflink>]) rated 27% of the papers he reviewed to be of good quality, 55% to be of acceptable quality and 18% to be of unacceptable quality. It appears that the proportion of "acceptable" papers are roughly equivalent in both fields. Given that just over half the papers in this paper and in Smith's ([<reflink idref="bib51" id="ref142">51</reflink>]) review were rated as "acceptable," it seems that reviewers and editors still have some way to go in terms of gatekeeping for consistently good quality IPA research. However, we do wish to underscore the point that papers rated "poor" in terms of meeting their IPA commitments may still have other merits.</p> <p>The tool that was developed to review the papers seems to provide a useful framework. Whilst there were some disagreements between raters, it did seem to have reasonable reliability and to provide a clear focus for identifying an acceptable paper.</p> <p>It is important to consider how the term "intellectual disability" was conceptualized in the studies we reviewed. Many authors devoted very little space to describing the ability levels of their participants. One of the reasons for the lack of information may be related to the recruitment process, as the majority of the participants were recruited through staff in health services. The organisations therefore acted as gatekeepers and may have their own assumptions and judgements about whether people with intellectual disabilities are able to take part in research or not. Lee ([<reflink idref="bib25" id="ref143">25</reflink>]) found that "gatekeeper" organisations can sometimes block access to participants when discussing sensitive topics. Another possibility is that qualitative researchers had reservations about categorizing their participants in terms of more formal measurement data. Unfortunately, a consequence of this is that it is difficult to see whether the experiences of people with more severe intellectual disabilities are reflected in the findings of these papers.</p> <p>Despite the term "intellectual disability" appearing in the keywords of many papers, a closer inspection revealed that whilst the researchers were labelling their participants as having an intellectual disability, the appropriateness of that label was not always clear. It is vital that future researchers improve transparency regarding the characteristics of participants recruited into their research otherwise we may fall into the trap of either generalizing from people with varying presentations or that we run the risk of recruiting people into research who may be in services but may not necessarily meet the definition of intellectual disability.</p> <p>All of the studies collected data using individual interviews. Malik et al., ([<reflink idref="bib29" id="ref144">29</reflink>]) did include a small focus group as part of their work. Focus groups may help less confident participants to engage in research, through peer support (Cambridge & McCarthy, [<reflink idref="bib8" id="ref145">8</reflink>]). In other fields, IPA researchers have been working with group data (e.g., see Palmer et al. [<reflink idref="bib37" id="ref146">37</reflink>]) and visual material (Boden & Eatough, [<reflink idref="bib6" id="ref147">6</reflink>]), and these developments may be helpful in the field of intellectual disability research.</p> <p>The studies in our review tended to decontextualize quotes from their participants and to remove the researcher's elaborating role in the interviews from the quotes which they presented. More nuanced and insightful analysis could be offered, if IPA researchers considered coding and discussing <emph>sequences</emph> of their interview data, rather than bite‐size extracts. Some of the strategies in Palmer et al.'s paper on focus groups (2010) are also helpful for keeping track of interviews with more complex interactional dynamics and may be adopted here.</p> <p>Interview schedules were only available for a minority of papers that were reviewed, so it is difficult to comment on whether the researchers adapted their interview techniques or used any novel approaches to engage the participants with the research. People with intellectual disabilities may require additional scaffolding through additional questions from the researchers to guide and support them through the research which suggests that particular care needs to be taken when designing interview schedules. Whilst peer‐reviewed journals have stringent limits on word count, the degree of detail regarding interviews varied significantly. The papers with the better analysis sections tended to have more transparency with regard to the topics covered in the interview too. This may be because the reader could draw links between the questions asked and the types of responses given by the participants. The whole process was integrated, and future researchers would be strongly encouraged to give more details on data collection. Without this information, it is difficult to judge the quality of the interview and its impact on the analysis.</p> <p>It is important that IPA researchers produce themes that transcend the structure of the interview schedule (Smith et al., [<reflink idref="bib52" id="ref148">52</reflink>]). In some of the papers, the themes derived were very closely linked to the research questions asked and had not been developed far beyond the level of "topics." This majority of the papers' analysis sections were descriptive rather than interpretative, because the level of analysis needed for a good IPA paper was not conducted or not reported. It is possible that the researchers struggled with interpretative commentary on short prose, but as noted above, there are strategies available for dealing with more sequential forms of interactional data. This requires the researcher to plot the development of meaning in the interplay between researcher and participant, producing interpretative commentary across several exchanges. IPA also seems to be often carried out by novice researchers, and this lack of experience may result in difficulties with interpretation of the data.</p> <hd id="AN0137846752-20">Implications</hd> <p>Good qualitative research can enrich our understanding of the meaning and context of events and processes. Good IPA offers as an experiential and idiographic perspective on the world. IPA can be an appropriate methodology to use in research with people with intellectual disabilities. 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  Label: Title
  Group: Ti
  Data: Is It Possible to Use Interpretative Phenomenological Analysis in Research with People Who Have Intellectual Disabilities?
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Rose%2C+John%22">Rose, John</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-2672-9767">0000-0003-2672-9767</externalLink>)<br /><searchLink fieldCode="AR" term="%22Malik%2C+Kulsoom%22">Malik, Kulsoom</searchLink><br /><searchLink fieldCode="AR" term="%22Hirata%2C+Edward%22">Hirata, Edward</searchLink><br /><searchLink fieldCode="AR" term="%22Roughan%2C+Harry%22">Roughan, Harry</searchLink><br /><searchLink fieldCode="AR" term="%22Aston%2C+Kirsty%22">Aston, Kirsty</searchLink><br /><searchLink fieldCode="AR" term="%22Larkin%2C+Michael%22">Larkin, Michael</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Sep 2019 32(5):1007-1017.
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  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
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  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2019
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  Label: Document Type
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  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Phenomenology%22">Phenomenology</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Guidelines%22">Guidelines</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Methodology%22">Research Methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Researchers%22">Researchers</searchLink><br /><searchLink fieldCode="DE" term="%22Competence%22">Competence</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.12605
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: We conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of "good" IPA work. Results: Twenty-eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as "good" quality; 16 (57%) were "acceptable", and 6 (21%) were "poor." This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. We encourage researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.
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  Data: 2019
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  Data: EJ1223809
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        PageCount: 11
        StartPage: 1007
    Subjects:
      – SubjectFull: Phenomenology
        Type: general
      – SubjectFull: Intellectual Disability
        Type: general
      – SubjectFull: Guidelines
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      – SubjectFull: Research Methodology
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      – SubjectFull: Competence
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    Titles:
      – TitleFull: Is It Possible to Use Interpretative Phenomenological Analysis in Research with People Who Have Intellectual Disabilities?
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